Tag Archive

Today is a damn great day, and I’m borrowing this beautiful pic from Donal Dineen to express it. The pic popped into my inbox today and happens to perfectly sum up my mood – internally I’m jumping for joy, with a whole bunch of open sky ahead of me. Today is the first day I officially don’t have to take medication for Leukaemia in two and half years. It’s been a long time coming, but it tastes all the better for it.

I’ve blogged about my diagnosis before – APML or Acute Promyelocytic Mylogenous Leukemia- which I was diagnosed with in August 2010. In short – I was lucky, as Leukaemias go this one is rare, but very very treatable. I had 6months of in hospital chemo and then 2 years of “maintenance” which is basically chemo-lite – a mix of chemo tablets and ATRA – the APML game changer.

Now, tonight, for the first time in over two years, I don’t have to reach out and take one of those tablets, and it’s an odd feeling. It’s the best thing ever, of course, to know that it’s at my back, but the temptation to add in the caveat “for now” is overwhelming. It seems impossible to think it could be over, just like that. I’m sure it’s not, I’m sure I’ll always hold the possibility of a return, but statistically and medically speaking I’m Leukemia free and highly likely to stay that way forever more.

It’s hard to get my head around – not least of all that I won’t have that nightly reminder, by way of one pill or another, that I’m sick/have been sick (the language can be confusing) and that the time between hospital appointments will stretch out some more so that I can begin to forget. I can’t quite imagine what that will feel like, but in some ways I don’t want to forget.

While I do want to start to reclaim my body, start to take ownership of it again, I don’t want to forget the experience. It’s going to sound odd but there are parts of it that I feel thankful for, thankful for the lessons it taught me about love and support and openness. That there was a whole host of people ready to catch me, in ways that I couldn’t have imagined. It’s utterly impossible to list them, but over the last 2 and a half years, and especially the first 6 months, but I have to say a huge thank you to them all. You all know who you are, the people who sent me things to distract and relax, sent me words and pictures to support and escape, sent me music and love and news and things to laugh about and think about…all those that helped me to stay connected, stay sane, stay hopeful. And since then, all those that check in, and mind me and love me and give me work and guidance and things to do, and helped me ease back in to my life, a life that is forever changed for the better.

There is nothing like an illness to stop you in your tracks. To teach you who you are, who your friends are and how extraordinary people are if you let them in – and actually, even if you don’t. I’ve said it before but if you’ll forgive me saying it again, my family and my friends are the best in the world and so overwhelmed me with their love and support that it’s hard to talk about. That they could be there for me yet normalise it all was the best cure. Not to mention every single nurse, doctor, attendant, caterer, cleaning person, porter, just everyone on Burkitt’s Ward in St. James’ Hospital who took extraordinary care of me, and the team, especially my consultant Patrick Hayden and my specialist nurse Lorraine, who continued to do so as an outpatient.

If I could do one thing to repay them all, it would be to ask everyone who reads this, everyone who can, to give blood. I literally lived off blood transfusions and platlet transfusions while I was at my worst, and it was those anonymous people hadn’t made the ultimate donation things would be very different for me I’m sure.

So, thank you all. It took a village but I couldn’t have done it alone. I just hope you’re all ready and waiting to help me rip it for the the next 2 and a half years- I think I may have earned it!

It’s exactly a year today since my Leukaemia diagnosis. I don’t know what it is about anniversaries but there’s something neat in looking back at a year passed, and something makes me want to mark it in some way. It’s been a hell of a year alright, and I really had no idea what I was facing into 365 days ago, but maybe that’s a good thing!

The best thing I can say is that, a year on, I’m healthy and happy and have an even better perspective on life than I had before now. In many ways I’m happier than I’ve ever been. I had 5-6months of in-hospital treatment and then have been recovering for the last 6 months (I’m still in treatment, and will be for another 18months or so, but it’s very light and is more of a “just in case” treatment in my case (APML) than a necessary one.), but I’ve been negative since round 1- which I underwent in Aug/Sep of last year- and thankfully it’s stayed that way.

It’s a funny thing; because the treatment is rolling you don’t really ever feel like you’ve reached a time when you can celebrate the Leukaemia being gone, and maybe that comes after the 2-year maintenance treatment is over, or maybe there’s a 5 year mark that you can celebrate, or maybe you never really trust that it’s gone. A year later I’m certainly not ready to “celebrate’ an all-clear just yet, so instead I’m really just having mini celebrations in my head. Every time I go to a gig, a movie, a gallery, a show, out to dinner, to see friends, talk to my bff’s about their upcoming weddings – which I get to go to later this year, go for a walk, go outside, drive my car, anything really, I tend to think how great it is to be well, how great it is to be out and about, and what a privilege it is. I’m probably 99% back to normal health wise, and it feels wonderful. Although physical strength returning has been slow – not in an obvious way perhaps, but more that your ability to stand for a long time, to go for long walks, to exert yourself in anyway is seriously diminished – Pilates has helped enormously (total convert- it’s amazing, go do it) though and the fatigue has passed which is a godsend. Having to take things slow is one thing, and to be welcomed, fatigue is quite another.

I guess the purpose of this little post is to mark the diagnosis anniversary, to give a little update on how I’m doing a year later, and to say thank you to all my family, friends and the lovely people I’ve met along the way that provided the support to get me through. People are pretty wonderful, given half the chance, and this whole experience has just made me realise that even more. It’s also turned me into a giddy monster; I’m so giddy for Electric Picnic this year, and hoping to dance around a field instead of being stuck in a bed like I was for last years festival, I’m giddy for my two main ladies’ weddings that are coming up before christmas, I giddy to get back to work, I’m giddy to head back to Edinburgh (where I first fell ill) next week, and spend some time there with my whole family to reclaim the city for myself, and I’m generally just giddy for everything and anything I can get my hands on to do, giddy for the future I guess, which is no bad thing. Long may it last.

If you’ve found this post because you or a friend/relative has been diagnosed with APML and you have any specific questions feel free to leave me a comment and I’ll be happy to reply or email you direct. See all Leukaemia related posts here

As promised the blog hasn’t become a cancer diary, but a few people have been asking how I’m getting on, so I thought another little update might be in order.

Last time I posted about my leukaemia I was out of hospital following my first round of treatment, and this time I’m out after my 3rd round. On the one hand it went quite slowly, but on the other I can’t believe I’m at the stage where I only have one more in-hospital round to complete. I fairly zipped through round 2, the whole thing took less than a month and I was out for just a week before embarking on round 3…which was far less zippy.

The way these treatments work you’re in hospital for the week you’re getting the actual chemo, but then you often get a few days break at home once that bit is over, while they wait for your blood counts to come down. For the uninitiated chemo essentially attacks the cancer but also your immune system/blood cells at the same time. When your blood counts drop you are more susceptible to infections, and more fatigued, so you have to be in hospital while that’s all going on. This time around it took nearly 3 weeks for my counts to recover, largely due to the fact that your body is slower to bounce back after each round, so the whole round took nearly 5 weeks.

Being in hospital for such a long stint makes you really think about freedom, independence, and about the things you really can’t live without – and the things you rather not live without, but can! I’ve discovered that I truly can’t live without music. No big surprise there for people that know me but I really mean that I actually can’t be happy without access to music. Listening to new music, or old favourites, just makes everything better. Thankfully I’ve plenty of musical devices in my room, access to the internet for buying new tracks, and people have been incredibly generous in dropping me in music to listen to- new albums or mix cd’s – which has been just wonderful. I’ve become an avid listener of John Kelly’s jk ensemble, but I miss listening live to Donal Dineen’s late night show –it’s well past my bedtime these days.

I clearly can’t live without access to the internet, or people, which these days are one and the same thing. I’m a social animal I guess, and even if you can’t get out it’s wonderful to be able to connect online and keep up with everyone’s news. I’ve had loads of brilliant visitors which helps lots too, even when you’re a bit tired it’s lovely to see a face from the outside world. My family have to get the gold star for visiting though, I think my mum and dad especially are in every day, and it’s a great touchstone to my “real” life.

Things I don’t like living without but can; fashion, food, travel, gigs. Of course I eat in hospital (!) but with the best will in the world the diet is not exactly what I’d choose. I miss salad and vegetables and fruit so very much, I may eat nothing but once I’m released back to my old life.

Fashion is a funny one. I still access it via magazines etc but I really miss getting dressed every day. I love clothes, love the choice process in buying them, wearing them, putting them together. It’s a little expression of yourself that you just have to do without when you’re unwell. My compromise is having a bazillion pairs of pj’s, some for day time, and some for sleeping in, so I’m technically “getting dressed” every day, in fact I’d give the Pyjama Girls a run for their money these days, but it’s not quite the same thing.

All in all I’m tolerating everything really well and the good news is the treatment is doing its thing. There’s a molecule in your bone marrow that they look to turn negative during treatment and it went negative for me in round 1 so the early indications are good. I’m not in a lot of pain, or very sick, it’s just the fatigue that is the worst. It’s so hard to explain if you’ve never experienced it because it’s not like healthy (or even hungover) tiredness, but here goes; it’s like your brain is fine, and in your head you want to do, read, watch, and listen to lots of things but your energy is so low that you really can’t get started on any of it, or concentrate for very long. It’s a strange feeling, and one that seems to take a while to lift as sleeping doesn’t fix it; it’s not like you just need to nap more. Even while I’m out I can feel it still taking hold and it gives me such appreciation for people who get M.E. or Mono; fatigue sounds like a little thing, but it can really take over everything.

I’m out now for another 10 days, which is beyond blissful- though the snow sort of makes me stuck inside all over again, it’s infinitely better at home. Sadly I’ll now have to be inside for Christmas and New Years; it doesn’t look like I’ll get through that final round till mid Jan, but that’s the price you pay to be well and I’m sure the world will still be here waiting for me when I get back (despite what the government are trying to do to it). The old marker was new years, the new marker is my birthday in February. I will DEFINITELY be out by then (I have been promised), to get the embers of my old life heating up again.

If you’ve found this post because you or a friend/relative has been diagnosed with APML and you have any specific questions feel free to leave me a comment and I’ll be happy to reply or email you direct. See all Leukaemia related posts here